Catch-22

You know that phrase “There’s no such thing as a free lunch.”? It’s even more true when it comes to medical care. Everything has a price. A medication may help, but causes side effects. A procedure may be critical in helping with one thing, but then causes another system to flare. Healthcare is a series of trade-offs. Is it worth it? Is the procedure or medication absolutely necessary? Does the medication or device help enough to make it worth the negatives?In my life, the weighing of those trade-offs has become normal. Some things are essential, no matter the side effects or results- but many others are small day to day wagers, betting that the consequences will be manageable. Of course, it’s not just patients who have those choices. For everyone, life is a series of decisions and consequences, on a scale that is rarely, if ever, balanced.
But it’s still tiring when you’re routinely coming out on the losing side. It leaves you always questioning how damaging an action might be. Mild annoyance or ER trip? Feeling bad for an hour or out of commission for a week?

Regardless, I’m scared not to try. I worry that by not trying, that action or ability will be lost. Or worse, that no matter what I do or how hard I work, trying won’t make a difference.

When I tip over the edge of “tolerable” there are of course physical symptoms, but also mental rebound. You might think that after years of knowing that some activities will hurt or that you’ll pay for them later, that the mental blowback would dissipate somewhat, but it hasn’t. I have more coping skills now than I did when first starting to get sick, but the actual physical symptoms aren’t less, only my capabilities to handle them. When I begin to teeter on the thin precipice of confidence and fear floods in, soon follows guilt. I’ll be angry with myself for choosing to do the activity, and terrified of the possibility that something I decided to do will cause catastrophic consequences. The idea that I am responsible for the worsened physical symptoms, rather than the normal ebbs and flows that I cannot control makes it much worse. While I try my best to make sure the decisions I do have control of are good, let’s be real here. No one makes good decisions all the time.

When your enemy is also the thing in which you must live, it becomes a necessity to enter some sort of truce. (Similar to how even if you don’t like your roommate, you have to be somewhat nice, because you have to share a relatively small space.) One of the biggest things I struggle with is forgiving myself and my body for the setbacks. And when I do make questionable decisions, rather than focusing on my frustrations and anger on myself, I try and concentrate on making it through the next minutes…concentrate on the things I can do to make it better, rather that agonizing over what I did to make it worse and beating myself up about it. I know it’s harder than it sounds, and I am in no means amazing at it. The majority of the time I’m frustrated and angry, and continue to wonder “If I had just….”

We all make decisions that cost in one way or another, but we can’t take those things back. After all, hindsight is always 20/20. So when you make those decisions, I know that not being angry or hurt is immeasurably difficult. But focus on not having the negative emotions be the only ones you feel. Your body is trying, and so are you. Allow your body and mind forgiveness, and allow the work in progress to continue. Setbacks happen. And feeling fear or frustration or anger doesn’t make you weak. It means you’re human.

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You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.’ ~ Eleanor Roosevelt